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Ever since last Christmas when I suddenly developed an acute reaction to breads (severe abdominal pain and then passing out an hour after eating bread), everyone, my doctors, and myself have been wondering why I don't just eliminate breads from my diet and be happy.

I finally think I figured out why; originally, I thought it was because I absolutely had to figure out why breads were causing this ridiculous reaction despite the fact that every allergy test and biopsy comes back NEGATIVE for Celiacs or any allergy to wheat or gluten.

I have a feeling the real reason is that I'm slowly starving to death. I lost nearly 40 lbs (unintentionally) since this all started, this is on top of the 50 lbs I lost several years back. Now I am absolutely drained of energy, starving, and hungry all the time.

So I want to eat foods that give me energy and make me feel satiated... and breads do that. But when I do eat bread I suffer excruciating pain for 5-8 hours and then pass out, waking up the next day even more exhausted than ever.

I feel like I have no energy and I'm slowly dying of starvation, I just don't know what to do and I feel like my mom and my doctors don't care and are letting me die slowly and painfully.

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Ever since last Christmas when I suddenly developed an acute reaction to breads (severe abdominal pain and then passing out an hour after eating bread), everyone, my doctors, and myself have been wondering why I don't just eliminate breads from my diet and be happy.

I finally think I figured out why; originally, I thought it was because I absolutely had to figure out why breads were causing this ridiculous reaction despite the fact that every allergy test and biopsy comes back NEGATIVE for Celiacs or any allergy to wheat or gluten.

I have a feeling the real reason is that I'm slowly starving to death. I lost nearly 40 lbs (unintentionally) since this all started, this is on top of the 50 lbs I lost several years back. Now I am absolutely drained of energy, starving, and hungry all the time.

So I want to eat foods that give me energy and make me feel satiated... and breads do that. But when I do eat bread I suffer excruciating pain for 5-8 hours and then pass out, waking up the next day even more exhausted than ever.

I feel like I have no energy and I'm slowly dying of starvation, I just don't know what to do and I feel like my mom and my doctors don't care and are letting me die slowly and painfully.

So....pain for 5-8 hours & then passing out is the way to eat more calories? You know that's not true. If you can't eat for 8 hours plus the "passed out" time, you aren't eating much. Of course you are dying of starvation, you are eating one thing that makes you sick and then not eating for a day.

Sounds like you don't eliminate the bread because you don't want to eat? Do you have an eating disorder? Want to kill yourself? things to consider....

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I think you do know what to do, you are just having a hard time doing it. Has nobody talked to you about non-celiac gluten intolerance? This is where you cannot tolerate gluten, but you flunk all the celiac tests. It is only recently that the medical community and the researchers, including the "God" of celiac, Dr. Alessio Fasano, have recognized that this condition exists. It apparently does not cause the same intestinal damage as celiac disease, but can have equally debilitating effects on one's life.

I would suggest you need to cut the bread pronto, and start eating wholesome whole foods, meats, veggies, fruits, nuts, seeds (and some rice) and regain your life.

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Being allergic to something and being intolerant to something are two different things. If it happened 'out of the blue' one day after Christmas, maybe you have reached your tolerance level to gluten/wheat? Have you tried eating gluten/wheat free bread or pasta to see if you can eat that? There are lots of other food choices you could have without wheat, to build yourself up. If you have lost so much weight and being as ill as you say, you need to see a new doctor without delay to get to the bottom of why you are so ill.

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I've been ton dozens of doctors all around LA, I've had an endoscopy and a pillcam and I have seen the images myself, there is no damage.

I have tried going gluten free and wheat free for a couple of months earlier this year in the Spring. When I ate a quarter of a doughnut to challenge wheat again I had the exact same pain and passing out.

I'm just feeling so frustrated, I just don't understand what could be causing this and it's frustrating my doctors too because they worked so hard with me and ordered so many tests we've all run out of ideas on what to do.

Sometimes there is no definative medical answers. You obviously have a severe reaction and have a need to be gluten free. When someone has a intolerance it won't show up on any tests. Elimination and your body reaction is the best measure.

My oldest son who is now 11.5 years old is gluten free and is not diagnosed with celiac. He has non celiac gluten intolerance. He has been blood tested annually since 2008 after my diagnosis, and every time his tests are a resounding negative. He has suffered constipation his entire life and was small for his age. Last year his symptoms got worse with daily abdominal pain/bloating/gas and nausea. This to me is not normal. Took him for the celiac blood tests again and a scope just in case he was a seronegative celiac. His scope/biopsy was normal also. I decided that it was worth a shot to put him gluten free because of his symptoms and his family history of celiac (mom and younger brother). Within 1.5 months all his symptoms resolved, he gained 6 pounds and his color was much better. He has also grown 4" in the last 18 months too. We did decide to challange him after 3 months and he did have symptoms. He decided for himself that he wanted to stay gluten free because he felt so much better. I thought that was a pretty big decision for a 10 year old to make. It's been a little over a year now and he his healthy and happy.

I don't know how old you are but do yourself a favor and go gluten free. You may never get any answers from doctors as to why you suddenly have this problem but you do. I hope you have the strength to do it so you can live your life the way you deserve..HEALTHY!

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Much like Roda's son, nothing showed up in my tests. But it's still a fact I cannot eat gluten or else I will have reactions to it. If that's the same to you, you shouldn't need any tests to stay away.

A lot of other people here had negative to their tests too. Forgive me if I sound harsh here, but I read it as if though you lack of diagnosis was sort of an excuse to eat gluten even though you feel bad eating it...

It is strongly inforced here to have a diagnosis before going gluten free, but like Roda already said, intolerance won't show up in tests. If there's really nowhere to go, I think you should return to a gluten-free diet. It might take some time to work, but it has before, and will again.

I've been ton dozens of doctors all around LA, I've had an endoscopy and a pillcam and I have seen the images myself, there is no damage.

I have tried going gluten free and wheat free for a couple of months earlier this year in the Spring. When I ate a quarter of a doughnut to challenge wheat again I had the exact same pain and passing out.

I'm just feeling so frustrated, I just don't understand what could be causing this and it's frustrating my doctors too because they worked so hard with me and ordered so many tests we've all run out of ideas on what to do.

Some of us will never show up positive on tests. I am one of them and was close to death by the time I was diagnosed. You have done the best 'test' there is which is dropping gluten and then challenging. You are clearly reacting so go with what your body is telling you. I hope you will listen to your body. Read as much as you can here and ask any other questions needed.

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A lot of us were bread and pasta fiends. I was a baker and cake decorator. I loved baking for people. I rarely ate my own cakes, as they made my stomach hurt. (Hmm, I wonder why?) My favorite breads to make were banana nut and dill onion. I loved it when my home reeked of sugar and flour from the cakes.

When my dad suggested that my migraines might be connected to gluten, I gave it up. Cold turkey. The possibility that there might be even some relief from the incredible daily pain was enough to make me stop eating gluten. I had no idea that so much of what I had been feeling would be affected by dropping it. I had been feeling like I was slowly dying with extreme fatigue and various pains. Instead of genuine hunger, I felt a gnawing pain in my belly. Within days I started to feel better, and a matter of weeks later I felt better than I had in ages with increasing energy. My stomach actually started to rumble when hungery instead of hurting, and I didn't get lightheaded anymore.

Too bad I didn't know about testing beforehand. When I did inquire about testing, I was blown off and couldn't even get an appointment to see a doctor for at least another two weeks. I had been gluten-free for a number of weeks already. I ordered a Biocard test to see if I could test myself, and I tried going back to eating gluten so I could be tested. I didn't make it through one meal. I had a violent reaction. That was my answer. Of course I tested negative on the Biocard test; I had already been free for too long. Who cares. I understood what my body was telling me. Screw the tests.

I mourned the loss of my breads and pastas and cakes and cookies. I wondered what I would eat that would satisfy me. But I took it as a challenge to get creative in the kitchen and try new things. I've tweaked my diet over the last four years, discovered more intolerances, and am in a happy place. I know what fuels me well, and I know what makes my body happy. It's a far far cry from how I used to eat.

Give up the stuff that hurts you, and play with your food! Sure it will take some adjustment time, but it will get better.

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Interests:Skiing, Biking, Hiking, Walking, Kayaking, Reading, Baking, Cooking, Sewing along with researching every flipping medical publication to figure out my ridiculously complicated health puzzle...think I may be getting close to putting the last piece on the table ;)

I've been ton dozens of doctors all around LA, I've had an endoscopy and a pillcam and I have seen the images myself, there is no damage.

I have tried going gluten free and wheat free for a couple of months earlier this year in the Spring. When I ate a quarter of a doughnut to challenge wheat again I had the exact same pain and passing out.

I'm just feeling so frustrated, I just don't understand what could be causing this and it's frustrating my doctors too because they worked so hard with me and ordered so many tests we've all run out of ideas on what to do.

I think you need to re-read the responses to your post. NON-CELIAC GLTUEN INTOLERANCE is the cause of your symptoms. There are NO MEDICAL tests that can diagnose this - the only test is completely removing all gluten. You need to remove ALL gluten - not just breads. It is tough to remove all sources, but once you do you will feel better, not necessarily in a few days - it can take months.

This site has plenty of information to help with the transition along with lots of folks ready to answer questions and support you, but we can not help if you refuse to hear what needs to be done. Your choice - I hope you decide to start healing.

Very few of us started out with having a problem with gluten. We all loved bread and pasta, with a few exceptions. But when something is killing you, you stop doing it.

You apparently have a gluten intolerance. The only test for that is the one your body does for you. When you eat it, you get sick. Perios.

There are thousands of delicious foods available besides gluteny breads. And gluten free breads and muffins and pastas can be every bit as delicious as gluten-filled ones. (But most of the store bought ones taste like dirt. Save your $ and learn to bake)

Time to stop making excuses unless your plan is to actually starve to death, because it sounds like that is exactly what will happen if you continue the path you are on.

This isn't the greatest bread recipe out there, but it's one of the easiest, and it tastes similar to regular bread. Gluten free doesn't have to be complicated, expensive, or tasteless.

You have to understand that gluten is probably the underlying issue here, and you'll never get better until you cut out the cause of your illness...for good! You need to find substitutes for bread, or you'll continue to get sicker and sicker. Eating gluten is no longer a choice for you, it's a potential death sentence.

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I'm not 100% sure if it's wheat flour or gluten, I know that I can eat unprocessed wheat like cereals without any problems.

I also need to figure out if it's the "bleaching agents" in enriched wheat flour that is causing me the problems because I've known for quite some time that I am allergic to bleach.

What if there is some third factor that is making my system react to bread and how come my endoscopy images did not show any damage to my intestines and I don't have any constipation or diarea?

Another issue is that I was told that gluten intolerance is primarily a Caucasian trait, is this true? I'm mainly a Russian/Arctic/Siberian native and Asian mix (or at least that is what my mom insists).

Please understand that I'm not trying to be difficult or challenge(y), I'm just trying to figure this out as its so weird. Thanks to everyone who has been patient with me and helping me with ideas. I really appreciate it.

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Interests:Skiing, Biking, Hiking, Walking, Kayaking, Reading, Baking, Cooking, Sewing along with researching every flipping medical publication to figure out my ridiculously complicated health puzzle...think I may be getting close to putting the last piece on the table ;)

I am not 100% certain you have a problem with gluten either. What you presented was you have unexplained weight loss, abdominal pain after eating bread and donuts, extreme fatigue and feeling like you are not getting energy from your food.

Did you have a full celiac blood panel? Did your gastroenterologist take enough samples from the small intestine? Do you have a copy of the endoscopic report - often there will be other indications - inflammation, etc. which the doctor will note on the report but will not always mention in his follow up with you.

What I am saying is you have enough symptoms and are connecting them to bread so it makes sense to completely eliminate all gluten from your diet for 3-6 months. If you improve and believe it is some other substance besides gluten, trial items without the suspect ingredients - but give your body the three - six months gluten-free - this is the ONLY test if you are gluten intolerant.

It's your choice - removing gluten could be the answer. If you feel like you are starving to death, isn't worth a trial to see if this is the reason? I guess I'm not understanding - you say bread is the only food that you feel gives you energy, but it also causes extreme abdominal pain and you sleep for hours afterward.

It is not true that Celiac Disease is only found in Caucasians. There was a study that indicates it is more prevalent - closer to 1 in 100 for Caucasians and closer to 1 in 140 in other races. Again these numbers are for Celiac Disease - I know of no difference between races for Non-Celiac Gluten Intolerance.

I do hope you find a solution that will help you lead a healthy life.

Good Luck to you.

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May I suggest that if you think you do not have a gluten problem, but rather a bread problem, that you eat all gluten except bread and see what happens?? Load up on pasta and cookies and cake. That test should be fairly definitive on whether bread alone is causing your issues. If so, eliminate the bread; if not, then we can help you take it from there.

Yes, it really does sound like you have an intolerance to at least wheat, if not gluten entirely.

Either way, it's probably best for you to cut out gluten completely for at least 6 months (as suggested) and see if you start doing better. It takes a lot of patience. You won't be 100% overnight. Even if you don't have the damage caused by Celiac disease, your gut still needs to heal and get used to you feeding it different things.

I also recommend doing lots of reading up on the gluten-free diet, Gluten Intolerance, etc etc.

I know its difficult to accept having a condition when there is no medical test to confirm it, but when it comes to food intolerances, you have to listen to your body. If bread makes you sick, don't eat it. It's not worth it. Your body will adjust to not having it if you give it time. Also, even though other wheat products like cereals and such aren't causing a reaction, it doesn't mean they might not be contributing to the problem. For example, if I unknowingly eat gluten-contaminated food, I might not feel any reaction until a couple days later after the damage is done.

I too remember still feeling hungry after non-gluten meals for a while, but I wasn't in pain! So eventually my body healed and adjusted to the new foods I was eating.

So, be patient and be strong. It's a big life change to make, but it's worth it.

Take care!

Peg

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Sandra - a couple things stood out when I read your orginal post a couple of days ago and I keep thinking about you and your situation. Over the years I have learned to listen to my intuition and this is one of those times. I think it is obvious that you and gluten do not get along, other people have suggested reasons why and even helped put a name to it but it boils down to simple cause and effect. You eat gluten, you have terrible pain you pass out.

Speaking from years of experience what I see is a full blown eating disorder that you are disguising. You mentioned a 40 lb unitentional weight loss, if you know that gluten will cause the effect that it does then that is intentional weight loss, it is the same as throwing up or abusing laxatives. And yes you are starving your own body by this repeated damaging behavior.

I think the most telling,and saddest thing you said was about your mom and doctor not caring. It is a cry for help and your gluten intolerence is the vehicle. Though my story is different I see myself in your words. I have spent too much time in hospitals for eating disorders (and I have been healthy for a long time) and eating disorders can be very sneaky.

Sounds to me like you have a lot on your plate. Maybe you can stop looking for an answer and agree to be gluten free while you use that energy to look for under lying issues. I wish you luck and a shoulder to lean on. Periwink <3

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Thanks Periwink, I do want to mention that I did have ED when I was around 12 (binge without purge) and it was shortly after a random sexual assult. That was the huge weight gain in my early teens that I now lost all the weight from.

I feel so strange being so heavy and big and now being so thin and starving, I always thought that it was safe for me to eat anything since no one in my family has ever had any food allergies or ED. I really hope this is not another ED, I really hope not because I don't know what to do.

I'm not really sure what my body is telling me, when I'm in pain, I always say to my stomach "okay, okay, I'll do whatever you want, just tell me what to do and stop the pain" and I don't know if it wants more food or no food.

All my GI doctors keep telling me that there is no damage from the endoscopy and pillcam images, they even showed it to me next to images of a bowel with Celiac disease and they look totally different.

My mom says this is all in my head, and now I feel like I'm going crazy or something. My mom also won't accept that wheat or gluten is the cause.

Anyways, I plan to go to a special Celiac-friendly bakery this weekend and get a bunch of gluten free breads to try out.

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Anyways, I plan to go to a special Celiac-friendly bakery this weekend and get a bunch of gluten free breads to try out.

That is a great place to start. Pay attention to what flours they use in the breads and which tastes you like and dislike. There are so many different flours used in gluten free baking and you may not like all of them. And be prepared that the bread is not going to be like gluten bread. Perhaps you could start making a grilled cheese or ham and cheese sandwich. Some breads if you find a good one can be eaten with just butter but most taste better toasted. You could buy a baguette and make crostini (nom, nom - wish I could have tomato ). Be creative in making your bread taste good because it takes time to adjust to the different flavors. And be prepared that you may want to feed the birds and squirrels some of it DO NOT (general consensus here, although some like it) buy Ener-G rice bread!!!!

Edited to add: With the holidays coming up, some say Ener-G makes good stuffing.

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Interests:Skiing, Biking, Hiking, Walking, Kayaking, Reading, Baking, Cooking, Sewing along with researching every flipping medical publication to figure out my ridiculously complicated health puzzle...think I may be getting close to putting the last piece on the table ;)

If you don't have luck at a bakery, you should be able to find Udi's breads and muffins at a store near you. Mushroom is right - some gluten-free bread tastes like drywall. Toasted or grilled cheese Udi's is probably the best easy to find solution.

Also want to add -- gluten is often very sneaky in the way it effects us. You can have very serious symptoms when gluten intolerant - not just with celiac. These symptoms can include neurological and behavioral issues - many of us that went undiagnosed or misdiagnosed while being told we were stressed, depressed or that are symptoms were all in our head. You hear that enough and you can't help but think maybe it is all in my head. Turns out some symptoms were in our heads - but the CAUSE was a very real problem with gluten screwing up our digestive systems.

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PowerofPositiveThinking,
Here is a thread that might help you.
https://www.celiac.com/forums/topic/122593-tonsillectomy/?tab=comments#comment-997652
Often taking the amino acid lysine will help mouth sores and swilling with salt water also can help if you can bear it. Don't swallow the salt water only swill it and spit it back out after 30 seconds or so.
Most Tonsils issues are probably not bacterial in nature but viral.. .. and explains why the ...

I had mono in my mid-thirties, pre-celiac diagnosis. My main symptom was extreme tiredness (well, that and a very swollen lymph node in my armpit). I was out of work for a month. If you’ve only had it since the beginning of the month you probably just need more time to heal. You will get over it!